staying positive
by Nigel Cooper
When James found out he was HIV-positive, he grinned and breathed a sigh of relief. It was the early Eighties and it seemed perfectly natural to hear the word 'positive' and think it was a good thing.
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Back then, both the medical profession and the general public were still largely in the dark about HIV and AIDS. 'It was something going on in America,' said James, 'it happened to other people – not to anyone I knew.'
As soon as James looked at his counsellor's face, he knew he had made a mistake. 'Positive means you're infected,' she said. He was told he had only two years to live.
But James didn't die in two years. In fact, at the age of 44, more than 20 years after he was diagnosed, he still lives a full life and, perhaps surprisingly, he feels he has a lot to thank his HIV for.
the difference between HIV and AIDS
HIV stands for Human Immunodeficiency Virus and although there is still no cure or vaccine, much more is known about it today than when James was told. Back then, HIV and AIDS were almost interchangeable terms and many people – health workers included – didn't know much about either.
If he were diagnosed today, James would be informed that HIV is a virus affecting the immune system, making it less able to fight off disease. It means people are more open to opportunistic infections, with possibly fatal consequences.
The term AIDS (Acquired Immune Deficiency Syndrome) was used for a long to describe the serious conditions resulting from HIV. AIDS was seen as an inevitable consequence of HIV – that's why James was told if he got an infection, he would contract AIDS.
Today, things are different. Due to more effective drugs, treatment and support, AIDS is no longer an inevitable consequence of HIV and doctors rarely use the term, preferring to use late-stage or advanced HIV instead. And as James proves, early prognoses of the life expectancy of people with HIV weren't always accurate.
emotional support
Although James got some counselling when he was diagnosed, it doesn't compare to the services available now. Currently, anyone getting a test will benefit from seeing an experienced counsellor. You will be able to discuss every possibility, from dealing with a positive result to how to ensure you stay negative if you are clear. If you are positive, an expert will discuss what your next steps could be, helping you make an informed decision on your future.
As James found, the social and emotional issues involved in a contracting HIV are just as important as the health issues.
'Apart from dealing with having HIV, I had to consider whether to tell my family and friends. I told my best friend at work, and she was incredibly supportive, but she couldn't stop crying for months. She was devastated that this was happening to someone she loved so much. That made me realise I didn't want my parents to know, I didn't want them to have to deal with it.'
But contracting HIV isn't only about your health or the reaction of family and friends. There are many other issues to be considered – like if and when you have sex again.
'I felt my body was dirty, it was horrible,' said James. 'I didn't think anyone would want to sleep with me ever again. It was two and a half years before I had sex. It wasn't an easy decision – I had been dating someone for eight weeks but I was terrified of being rejected when I told him about my HIV status. I even went to the GP to get advice on how to tell my partner. I needn't have worried – he was completely supportive and we ended up staying together for eight years.'
getting tested
When James was first tested, there was a stigma attached to having an HIV test. These days, you can have an anonymous test if you wish, and the process has evolved to make sure you aren't left feeling alone or confused – especially if you test positive.
The most common reason to have an HIV test is because you have had unsafe, or unprotected, sex. It is estimated that 42 million men, women and children are living with HIV in the world today and the majority of infections are through having unprotected anal or vaginal intercourse.
HIV is carried in blood, sperm, seminal fluid, vaginal fluid (including menstrual fluid) and breast milk. It can't pass through unbroken skin, however, and it isn't airborne like flu or the common cold – it has to enter the body via the bloodstream or through sex. Some cases of HIV infection have been attributed to oral sex, although it is difficult for the virus to survive in the mouth and get into the bloodstream this way.
Body fluids like saliva, sweat and urine don't contain enough of the virus to infect another person.
The HIV test is a simple blood test and doesn't actually test for the virus itself. It actually looks for the antibodies created by your own immune system to combat HIV. If you are HIV positive, it means you are producing antibodies to fight the virus.
Because the test searches for antibodies rather than the virus, there is a window of three months after exposure where the test might not be accurate. This is because antibodies may not show up in this time, even if you have been infected.
anti-HIV drugs
James stayed healthy without drugs for a long time. In fact, he was only advised to start taking combination therapy – a mix of anti-HIV-drugs that combat the spread of the virus – five years ago. After 15 years of living without them, this came as a surprising blow.
'It was almost like being diagnosed all over again, it was like I was losing to the virus. I didn't even take aspirin before, so it was difficult to get used to taking tablets everyday. There were side effects, too – sickness, diarrhoea and numbness in my feet. And because I didn't feel ill before taking the anti-HIV drugs, some days I wondered whether it was worth it.'
Despite this, James adjusted to his new regime and remains optimistic about the continuing advances in medical science. Current therapies can successfully reduce the level of HIV in your bloodstream and can dramatically improve the life expectancy of people living with HIV. Although a small minority of people can't benefit from anti-HIV drugs, most see dramatic results with the treatments available in the UK today.
a positive future
James admits that being HIV-positive means he has trouble looking to the future – but 20 years after being diagnosed, he is still enjoying a happy life and hasn't suffered any major illnesses.
'You adjust to having HIV, rather than come to terms with it. When I was first diagnosed, I was treated with fear – one consultant even refused to treat me in case I infected him – I only had a patch of dry skin on my leg. But now there are people and organisations out there to help. There are people who can say "it's normal to feel like that," or "that's a natural reaction."'
In many ways, James believes his HIV status has enriched his life. As a direct result of his infection, James started volunteering to talk to people and educate the public. He feels that having HIV has allowed him to give something back in a way he couldn't do before. He now works for a social care charity, helping others.
'I can honestly say my HIV status has not restricted my life in any shape or form. In fact, it has enabled me to make very positive decisions.'
help and info
Channel 4 is not responsible for the content of third party sites.
You might like to check out our features on getting tested for STIs, teenagers living with HIV, and the history of HIV/AIDS in the UK.
organisations
Crusaid
1-5 Curtain Road
London EC2A 3JX
Tel: 020 7539 3880
E-mail: office@crusaid.org.uk
Website: www.crusaid.org.uk
Crusaid works in the UK and internationally to improve the livelihoods of people affected by HIV/AIDS and to prevent the spread of the virus.
The National AIDS Trust (NAT)
New City Cloisters
196 Old Street
London EC1V 9FR
Tel: 020 7814 6767
E-mail: info@nat.org.uk
Website: www.nat.org.uk
UK's leading HIV and AIDS policy development and advocacy organisation with lots of information on current campaigns and issues such as HIV and mobility, discussing immigration issues. Many documents can be downloaded for free.
Positively Women
347-349 City Road
London EC1V 1LR
Tel: 020 7713 0444
Helpline: 020 7713 0222 (staffed by HIV positive women: Mon-Fri 10am-4pm)
E-mail: info@positivelywomen.org.uk
Website: www.positivelywomen.org.uk
Charity offering peer support for women living with HIV by women living with HIV.
Sexual Health Line
Helpline: 0800 567 123 (24 hours)
Website: www.playingsafely.co.uk
Provides confidential information and advice on all aspects of sexually transmitted infections and HIV prevention. The helpline serves as the first point of call for many people not already in touch with sexual health services.
Stop Aids Campaign
c/o UK Consortium on AIDS & International Development
New City Cloisters
196 Old Street
London EC1V 9FR
Tel: 020 7253 5860
E-mail: info@stopaidscampaign.org.uk
Website: www.stopaidscampaign.org.uk
A UK Consortium bringing together some of the UK's leading development and HIV/AIDS groups, working to raise awareness in the UK. PDF downloads available on UK government spending and facts and figures from the World Health Organisation.
Terrence Higgins Trust
52-54 Grays Inn Road
London WC1X 8JU
Helpline: 0845 1221 200 (Mon-Fri 10am-10pm; Sat-Sun 12-6pm)
E-mail: info@tht.org.uk
Website: www.tht.org.uk
Offers a wide range of free and confidential services for people with HIV, including specialist advice and representation on welfare rights, housing and legal matters, practical help and befriending.
websites
aidsmap
www.aidsmap.com
Information, news and resources for people with HIV and AIDS, community organisations and professionals. Features extensive information on treatments plus a searchable database of HIV clinics in the UK.
AVERT
www.avert.org
Contains HIV and AIDS statistics, information for young people, personal stories, a history section, information on becoming infected, a young and gay section, and free resources. Features an article called HIV & AIDS: Stigma and Discrimination.
The Body
www.thebody.com
Offers a weekly e-mail newsletter on the latest research and information for the HIV community. Links to a comprehensive list of HIV publications and to forums where you can submit questions to doctors.
Condom Essential Wear
www.condomessentialwear.co.uk
For more information on condoms, sexual health, how to protect yourself from STIs and how to find your nearest GUM Clinic.
The Guardian
www.guardian.co.uk/aids
Numerous reports from the Guardian on HIV/AIDS.
HIV i-base
www.i-base.org.uk
A treatment activist group, HIV-positive led and committed to providing timely HIV treatment information both to positive people and to health care professionals. Covers important medical advances and houses up-to-date online articles. Their article on HIV, Pregnancy and Women's Health offers general background information, advice about planning a pregnancy, prenatal care, HIV drugs and baby's health and other useful information.
International Men's Health Database
www.emhfdatabase.org
IMHD is a database of individuals and organisations that work with, or influence the health of men within their country and internationally. It is intended to be a key resource for health practitioners, academics, users of health services and policy makers. This is a public database giving free access to the information it contains.
Positive Nation
www.positivenation.co.uk
National charity of those living with HIV, with a monthly magazine.
Project Inform
www.projinf.org
Provides vital information on the diagnosis and treatment of HIV disease, with online articles on available drugs and their side effects.
UK Coalition
www.ukcoalition.org/Weblinks/around.html
Lists many useful national and also local organisations for those who are HIV positive or have AIDS.
reading
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The No Nonsense Guide to HIV/AIDS by Shereen Usdin (Verso Books, 2003) |
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Encyclopaedic Dictionary of Aids-related Terminology by Jeffrey T. Huber (Haworth Press, 2000) |
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The End of Innocence by Simon Garfield (Faber, 1995) |
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(December 2003, resources updated February 2005)
